Month: May 2016

How Facebook Made Me Realize I’m Not A Superhero

~ drivingthestrugglebus ~ 2 Comments

A few years ago, my husband bought a tee shirt that read “May your life someday be as awesome as you pretend it is on Facebook!” We laughed, and laughed.

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Just about anyone with an active social media account can relate to that phrase, because we all have one or two friends whose posts seem out of touch with their actual lives. I still see the humor in the statement on that shirt, but lately, the truth behind those words really resonates in me.

Since joining the special needs community, my social network has grown exponentially. In an effort to find education and support following my daughter’s autism diagnosis, I have become an active member of several virtual communities. Where, before, I primarily used Facebook as a means to exchange casual updates with family and friends, now, I find that I utilize most of my time online engaging with other parents of children with special needs. These exchanges via social networking were what inspired me to share my journey through my blog.

I have committed myself to being very candid about the experiences I share. I’m open in sharing about the struggles my family has faced; I even named my blog ‘Driving the Struggle Bus’. However, there is underlying positivity in nearly everything I write. I use my voice to show others how each challenge has been an opportunity to learn more about myself, and a chance to find strengths I never realized I possessed. While my experiences are unique, my point of view is not. Most of the other parents I’ve connected with in special needs communities utilize social networking the same way-to encourage one another and build each other up.

Sometimes, though, we build each other up to a fault. When members of our communities express self-doubt, we rally together to remind them of the countless ways their struggles have made them stronger. While such vehement support is desperately needed at times, it can cause us to embrace a sort of “superhero” identity. When fifty people regularly remind us that “we’ve got this,” we tend to believe them.

The problem is, we’re not superheroes. We’re parents, and all parents, while they have children with special needs or not, are human. Sometimes we don’t “have this.” Sometime’s it’s all we can do to clean up and get our children to bed before we break down and cry. We spend so much time telling one another to “soldier on” that we start to forget that it’s perfectly acceptable to break down.

The other day, scrolling through my regular news feed on Facebook, I broke down. I dropped the façade of the superhero mother who is completely at peace with her child’s autism, and realized I was human.

All it took to bring me back to reality was a simple post, another mom describing, in detail how articulate her daughter (who is the same age as mine) is. I became angry and judgmental- the very things I have consciously tried to overcome. I said to myself “All she ever does is brag about her perfect life, and how advanced her daughter is!” I unfollowed her, because I couldn’t bear to see any more.  I texted a mutual friend, who commiserated with me. It’s what I needed, at that moment. I needed to realize that even though my daughter is amazing and I accept that she has delays,, sometimes it’s going to hurt like hell to see that other children her age function on a whole different level.

Once the moment had passed, I reflected about the raw emotion that post brought out in me. The mom who shared it isn’t one of my closest friends and I don’t see her regularly. It was easy for me to use her as a scapegoat. Was it fair of me to do so? Absolutely not. I recognized that, while the majority of her posts are centered around her daughter’s accomplishments, her intention was not to brag. She was proud, just like I am of my daughter’s achievements, which I frequently share.  It’s all about perception. 

What I gained from this experience was simple insight. Facebook is merely a highlight reel of one’s actual life, and should be viewed as such. In failing to remember this, we are approaching it defensively and inviting others to offend us. A person is no more at fault for sharing her daughter’s accomplishments than I am for blogging about my struggles.

What You Don’t See When I’m on My Phone Around My Children

~ drivingthestrugglebus ~ Leave a comment

 

 

There is so much talk, anymore, about parents and their overuse of smartphones while in the presence of their children. If I took the time to scroll through a day or two on my Facebook feed, it wouldn’t take long to find that one of my “mom friends” shared a piece like this one, titled “Dear Mom on the iPhone: Let me tell you what you don’t see.”

Now, I’m not for a second saying I’m perfect. I’ll be the first to admit I’m far from it! My phone is more of an appendage these days than it is a device. I am a mother of three young children. I work full-time. A significant portion of my non-working hours are spent facilitating the care of my youngest child, who has special needs. I write, and when an idea inspires me, I pick up my phone and transfer the idea to something concrete. Otherwise, amidst the shuffle of daily life, these moments that become the stories I share will be lost on me.

So, while you might look at me in those moments and think to yourself that I had ought to put my phone down and attend to my children, I would like to tell you what you don’t see.

The photos above were taken early on a Sunday morning on a weekend trip to the beach. This was on a “date”, to which I was invited by my six-year-old son. He has earned the nickname “Rooster” because no matter how late we keep him up, he awakens with the sunrise, ready to take on the day. On this particular morning, we set out early to walk the shoreline and collect shells. These particular photos were taken just moments before my phone slipped out of the pocket of my sweatshirt and into the ocean water.

That Sunday morning, I lamented the loss of that phone, but it wasn’t because it meant I’d be disconnected from the world around me. I was saddened, because the loss of that device meant the loss of a weekend’s worth of family photographs. In particular, I was upset about the loss of the simple photos above.

What you didn’t see when you saw me pull out my phone on the beach was Cameron, asking me on that date, with sincerity in his big blue eyes, pleading for some time alone with his Mommy. You didn’t see the afternoon trip to the aquarium the day before, cut short by  the meltdown of his little sister, who has autism. You didn’t see that we almost didn’t make it into the aquarium at all, or his frustration as I couldn’t stop to talk about the sharks, which are his favorite. You didn’t see a little boy who tells me a lot, lately, that we don’t get to spend enough time together. You didn’t see him at my bedside that morning, as he took my hand in his and led me to the door.

I take photos of my children, and in moments when they seem to feel less than special, I pull them out and we retell the stories within them. I use them as a tool to help them remember the details of those moments. These stories stop time, and make them realize that while they don’t always get enough of me, the moments I do get with them are dear to my heart.

Our date to collect shells didn’t end when my phone slipped beneath the waves. In fact, we walked for over an hour, his hand in mine, inspecting and discussing all that had washed ashore after the storm the night before. I may have my phone in hand more than you deem necessary, but I don’t rely on it as I enjoy the company of my child. Just being with him is enough.

If you see me out with my children and I pull my phone out of my pocket, I’m more than likely just making an effort to capture a precious moment. Spare your judgement in those situations. If you choose to judge, anyway, ask yourself this – How many of you are reading this on your phone, right now, in the presence of your children?

Today, that phone came back to life long enough for me to upload those memories.  Tomorrow morning, I will show my son these pictures and spend a few minutes remembering. He will start off his day with a little extra love in his heart, because of what that device afforded me to do on that walk alone on the beach. As the days turn into months, then years, I will get asked out on far less dates. If using my phone in the presence of my children means that I can keep them little a bit longer in my heart, perhaps I’m not the negligent mother you saw at first glance. Perhaps before you choose to judge me, you should realize that you don’t know me, at all.

Why It’s Okay to Make Mountains Out Of Molehills

~ drivingthestrugglebus ~ 2 Comments

Today, like every Monday and Tuesday, I picked Piper up from school to take her to therapy. I’ve grown to love this routine for many reasons. I love the one-on-one time we share in the car. I love how proud she is when she finishes each session with Kate, her speech therapist. More than anything, I cherish the look of elation on her face when she spots me walking toward her. She hugs me with every ounce of love inside of her, and leaves her friends and teachers with a smile, an emphatic wave, and a heartfelt “Goodbye!” She brings light and pure, innocent happiness whenever she goes.

 

Today, though, something just felt “off” as soon as I laid eyes on her. Almost immediately, guilt set in. A rainstorm had slowed my drive. I was five minutes behind, and instead of sitting in her normal spot by the front entrance, she was with her teacher, loading her friends into the vehicle that takes them home. Her teacher reported that she’d had another fantastic day, but I could see she was hurting. I assumed that by being a few minutes late, I had thrown off her routine and had been the cause of her melancholy spirit. She didn’t say goodbye to anyone. She clung to me, and stared over my shoulder at the school.

As I carried her towards the car, she let out a whimper that I’d never heard before. I stopped walking, and attempted to meet her gaze. “I’m sorry, sweetheart,” I said. “Are you sad because you didn’t get to ride home with her friends?”

Her eyes were still fixed on the school. “No. I don’t want that.”

With a heavy heart, I buckled her into her seat. It was when I fastened the last clip that I saw large tears rolling down her cheeks. My sweet child was crying, silently. She looked completely heartbroken. I tried to hide my own heartbreak and once again asked her what was bothering her. Because she still struggles to consistently carry on conversation, her direct response stopped me in my tracks.

“I want my MiMi, and I can’t get her!” (MiMi is her baby blanket- her security.)

Not fully expecting her to further respond, I asked if she had left MiMi in the car, with her friends.

“No, Mommy. In Rachel’s room .”

Relief washed over me. I quickly unbuckled her and reassured her. “Come on, P. We’ll go get her.”

We didn’t even reach the door before her teacher rushed up to us and offered her apology for not packing the blanket in her backpack. Another teacher overheard our conversation and offered an apology of her own. She explained to me that Piper had tried to tell her she needed to take MiMi home, she had mistakenly thought it was just a blanket for rest time, and had denied her request.

“She really did try to tell me, over and over. She’s a smart little girl. I’m sorry, Piper.” Her apology was heartfelt.

With that. MiMi was returned. Piper relaxed and offered up the goodbyes she had withheld just moments earlier. Just like that, my child’s sweet demeanor returned. I got her situated in the car one last time and we set off to therapy.

It was while I waited in the therapist’s office, or ‘Kate’s house,’ as Piper would say,  that I had my “Ah-ha” moment.

To many moms, the above exchange might have been received in a whole different way. Instead of feeling guilt over throwing off my child’s schedule, I might have been annoyed that my own timeline had been interrupted. I say this not to pass judgement; I say it, because I’ve been that mom in the same type of situation with my older children. In my head, I might have said to myself “Are you kidding me? We’re running late to begin with, and now we have to go all the way back into the school for a blanket!”

Not this time, though. This time, as I sat there, the significance about what had unfolded at school that afternoon washed over me. That small exchange left me in complete awe of my little girl and all she has accomplished.

Six months ago, a moment like that would have been a complete disaster, because six months ago, my daughter could barely communicate basic needs. She would have felt lost and scared without MiMi, and would have had no way to let me know. I wouldn’t have realized MiMi wasn’t in her bag. The further away we got from school, the more terror she would have felt. Undoubtedly, it would have quickly turned into a full-on meltdown.

Not long ago, Piper could barely find the words to tell me she was thirsty. Today, we made a true connection, She was able to show me that she was upset, and using the words that were trapped inside of her head for so long, she clearly and concisely communicated to me what the problem was. Even more, she had communicated it to her teacher! I’m sure that I can’t even begin to imagine the relief she must have felt.

It’s amazing how empowering an exchange like the one we had today can be! It’s something truly worth celebrating. She’s had to work incredibly hard, hours on end, just to get to this point, and I’m not ashamed to tell the world how proud I am.

When you have a child with autism, like Piper, these are the exact victories that demand to be celebrated! In failing to do so, we would be failing to recognize the hard work and sheer determination of our children. If we didn’t celebrate these breakthroughs, we would be failing to recognize the therapists who dedicate their lives to helping our children find their voices, and in turn, change our lives, as well.

There is no shame in making mountains out of molehills. In doing so, we are showing our gratitude and building the confidence of our children, who will undoubtedly move those mountains, someday.

A Child Doesn’t Need Words to Say “I Love You”

~ drivingthestrugglebus ~ 3 Comments

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(This post was originally featured on The Huffington Post)

Another Mother’s Day has come and gone. My children have long-since drifted off to sleep, and I’m quietly reflecting on the many ways they brought joy to me today. Some of this joy was the result of intentional acts of kindness, including a beautiful bracelet made by my oldest daughter, and a heartwarming “All About Mom” book, filled in by my kindergarten-aged son.

These were gifts that my children made in advance and gave to me with great anticipation. They knew it was to be a special day for me. From the moment their feet hit the floor, they were active participants on a mission to make Mom feel extra-loved! Their mission was a great success, and I took every opportunity I had to let them know it.

My youngest daughter, on the other hand, has no clue what Mother’s Day is, or that it even exists. She’s three years old, and on the autism spectrum. To her, today was just another day. Still, she, too, managed to make me feel loved beyond measure.

There are so many ways in which every child on the autism spectrum, verbal or non-verbal, is capable of saying “I love you.” What they need is for us to realize that we can listen with more than just our ears!

Many moms of other children with autism have opened up to me and have shared their stories. I’ve heard the heartbreak in their words as they have described how it feels to know they may never hear the voices of their non-verbal children. It’s humbling, to say the least. I’m incredibly fortunate that my little girl is able to speak. I have heard her little voice say “Goodnight! I love you!” From mothers who don’t have that luxury, I have learned that children with autism express love in a multitude of ways, often without ever uttering a word.

When a child with autism has a great day, socially, yet breaks down the moment she is in the safety of her own home, she is saying “I love you enough to let you see this. I feel safe with you.”

When that same child clings to you and sobs over the most seemingly trivial change in routine, she recognizes security in you. She isn’t just being difficult or finicky. She is saying “I love you, and I’m not letting go, because right now, you’re the only one who I know can make it better.”

When a child with autism smacks you in the face as you pretend to cry during play, he isn’t being cruel. He is expressing distress over seeing you distraught. He is saying “I love you, and I can’t stand to see you sad, Mommy.”

Yes, my daughter can speak, but she also does each of the things mentioned above. Instead of being hurt by her behavior, I’ve learned that I need to look beyond the surface and listen to what she’s telling me with her actions. They’re all rooted in love. This is not always easy to do. I’m far from perfect and often become frustrated during these outbursts, but I am learning to hear the things she’s not saying in times like these.

My daughter speaks, but she’s not yet able to understand the significance of days like today. Sure, she takes cues from her older siblings and repeats the phrase “Happy Mother’s Day.” She is intelligent, and knows that these words get a positive response, but she has no idea what they mean.

Tonight, her actions said “I love you” incrementally louder than any words she’s ever spoken.

I put a different spin on Mother’s Day, this year. Since my children are what make me me “Mommy,” I gave each of them a gift- a small wooden photo of them with me. At bedtime, I found my youngest daughter in her bed, snuggling with hers.

In so many situations, you can feel an overwhelming expression of love without having to hear it expressed verbally. There is no greater feeling than looking at my little girl and knowing that I am loved and adored, just for being me.